Saturday, June 11, 2011

One year ago:A sunny Saturday morning - Mass all together as a family, and then Joey's one week check-up. I took a deep breath of confidence, knowing that my wonderful experienced pediatrician was going to check Joey's breathing. Looking back, I'd bet that his throat had that same lump that I'd been fighting for days. He later confessed that he knew something was wrong, but he had no idea just how much.

"Just a quick chest x-ray to check things out. I know we like the wait-and-see, but if I tell you to come back Monday then I won't sleep all weekend." I brought Joey to Frederick for his x-ray , and waited for the radiologist to read it. Our nurse from our doc's office called, telling us that Dr. Lee was on his way to talk to me. I knew something was wrong, but that was really above and beyond the call of duty. It took forever, but really I wasn't minding the time to sit in the quiet and nurse my little Joseph. Snuggle him. Kiss him. The clock was pretty quiet compared to the ever-persistent pounding of my heart. I studied every inch of his perfect little face while sitting in that uncomfortable waiting room chair.

Dr. Lee appeared, apologizing for the delay as he'd been to see the neonatologist after being dissatisfied with the initial report. Joey's heart wasn't the right size. We dialogued medical terminology and my brain shifted into "nurse" mode and I followed him to the ER, from where he would be transported to Children's National Medical Center in DC. Dr. Lee, my kind and faithful pediatrician whom I have trusted with all 3 of my kids, proved that he is every bit as compassionate and caring as he is knowledgeable and professional, as he gently put his arm around me, and stayed with me until he knew Patrick was on his way.

I chatted with the ER nurse while gently stroking the top of my Boy's soft hairy head. Patrick was there by the time the flight paramedics from Children's arrived, and it took innumerable tries to get an IV in my tiny little 8-day-old newborn. (We would find out later that it was part of his pathology that his veins were under-developed because of his heart disease.) I cried watching him laying there, feeling helpless and for the first time confronting the unknown.

"Why can't I be someone who can't eat in an emergency?" I thought as we grabbed a burger on the way to DC. We started the prayer-chain phone calls and texts to family and friends-who-could-be-family. No we don't really know what all is going on, we just know that his heart is too big and we're heading to DC for an echocardiogram to tell us more. He's in good hands, safe now, and we'll know more in just a few minutes. We had no idea just how MUCH more.

It's a wonder Patrick had any circulation to those fingers left, as I held in hand in the elevator, taking comfort that we faced this fear together. There were a lot of people in Joey's room: the NICU nurses offered us a gentle smile. The doc with whom we'd spoke on the phone was giving us a very quick overview of the possibilities and how we might treat them - I think he mentioned 3, but he wasn't very convincing. The 2 cardiologists performing his echo. The 2 quiet ones standing to the side, introducing themselves as Cardiac ICU docs. And there, in the middle of it all, my boy. Was that him? My Joseph Thomas in the NICU bassinet with an IV and wires and quiet. He wasn't crying or fighting. He was fighting so hard for his life he had no fight left for probes or wires. Hey Baby Boy, how'd you like that helicopter ride? We can't tell your sisters, understand? They'd be so jealous.

The cardiologist introduced herself, and ever since that night her name has been music to my heart. She had us sit as she herself pulled up and chair and drew us a picture that has been branded in my memory. The names, terms, explanations, all permeated with compassion and patience. Thank you, that was a great explanation, and I don't think I have questions yet.I wouldn't even know what questions to ask. I might be calm, but my head is spinning. I was still in nurse-mode, where I could understand and process what was going on with a touch of rational thought, but I was still a Mama scared for my Baby. waiting for the surgical meeting on Monday afternoon, got it. That's a good sign, yes. WhAT DO WE DO UNTIL THEN???

Those quiet docs came out of the corner explaining that they'd be assuming care of Joey downstairs in the Cardiac ICU (CICU). Well, it's official - we have a cardiac kid. I nodded. I think I knew - obviously I didn't know exactly what was wrong, but I know that I wasn't entirely surprised. Then the hustle and bustle as they readied Joey for his next big trip.

One more memory from that first night - I have no idea if I slept or ate or took my eyes off of him. What I do remember is coming back into the room after they put Joey on the ventilator. RELIEF. After days of being scared watching him breathe so fast, so shallow, Iwas finally relieved to see his chest rise and fall is slow, steady intervals filling his lungs with Oxygen. I had no idea what was in store for us, but at that moment I knew he was finally resting, and that breathed relief through my whole body.

I look at my One-Year-Old Boy now, giggling and taking deep breaths, and every day I whisper a prayer for those amazing doctors and nurses. Thank you for being there that night. Thank you from the bottom of our hearts.

3 comments:

Ah, what a wonderful post to read, Kate! I remember being out your way a year ago for Fr. Mick's ordination, hearing of all of this, praying so hard. What a great joy and blessing to be reading of your giggling chunky one-year-old boy! I will pray tonight in thanksgiving for all of those doctors and nurses, too! :)

Let me sum up...

When our Joseph Thomas was just 8 days old he was diagnosed with 3 major heart defects. He has faced multiple heart surgeries and life-threatening procedures, survived CPR, been on various forms of life support, lost and found his voice again, and defied statistical odds. The doctors called him "Rock Star" and our Priest-friend called him "Rocky." He will face more challenges and surgeries in the future, but we hope not for a while. This is our boy's story!